Iceland's Genetic Jackpot

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Iceland's Genetic Jackpot

One stamp of approval stands between a genetic research company's plan to map the genes of the entire Icelandic population and drawing the first DNA sample.

The 275,000 pure-bred residents of Iceland are ideally suited to genetic study, and researchers believe that creating a massive genetic database could lead to the discovery of disease patterns and new drugs.

That fact didn't escape the Swiss drug company Roche Holding, when it granted Decode Genetics of Iceland US$200 million for the study in 1998.

Iceland's Ministry of Health is expected to decide within the next few weeks whether to approve the sweeping research project. If the project is approved, Roche and Decode Genetics could effectively own the genes of the entire island nation. The companies would have the right to sell their discoveries for a 12-year period.

It's significantly easier for genetic researchers to isolate genes in a homogenous population, such as Iceland's, than it is for them to study a more varied population, such as the United States. Anomalies, including diseased genes, are easier to pick out when the gene maps of individuals are similar.

For centuries, Iceland's population has been repeatedly decimated by disease, famine, and natural disasters. There are few immigrants on the island, and that has made it one of the most genetically pure populations on the planet.

What is just as enticing to researchers is the Icelandic passion for genealogy. The island has kept extensive and detailed records, some dating back to the Vikings. The project aims to use these records, which is public information in Iceland, to find patterns of disease in families.

The genealogy information would be encrypted by the Data Protection Commission of Iceland to insure that the identities are concealed. With DNA samples taken from consenting donors, which would also be encrypted, the project hopes to isolate the genes responsible for certain diseases.

Many genetic studies are done using DNA from patients visiting their doctor for, say, diabetes. The doctor asks the patient if he or she would like to participate in a study that could benefit diabetes treatment. Although this is a common way to recruit study subjects, some call it coercive.

"When it comes to this database we can't do that. We will have to use much less intrusive methods, such as putting ads in newspapers. It will be the initiative of the individual rather than [patients] being leaned on by a doctor during a visit," Kari Stefansson, CEO and president of Decode Genetics, said.

The project has received an enormous amount of media attention, including more than 700 newspaper articles and 150 television programs, mostly regarding privacy and informed consent arguments.

Some protest has been voiced regarding the use of the genealogy records, because while individuals can "opt-out" of the research project, the information will be used without informed consent. Approximately 11,500 residents have opted-out so far.

One of the most outspoken opponents is an organization called Mannvernd, a group in Iceland that believes that a law passed by Iceland's parliament approving the research infringes on human rights and personal privacy.Iceland's parliament passed an act in December 1998 approving the DNA database project, and has since been working on regulations for the project with Decode Genetics.

Stefansson said a decision was expected within the next couple of weeks. "All of the issues have been resolved, and I believe it's just a question of finalizing the text of the license."

Bioethics groups often oppose what's called "broad consent," meaning that study subjects can approve the use of their DNA information for future studies as well as the one at hand.

Although Stefansson agrees that consent should always be obtained, he also believes that not allowing broad consent denies people their autonomy.

"At some point we stopped looking at the autonomy of people and started using informed consent as the goal," Stefansson said.

"By saying so, that's preventing me from giving broad consent, and assaulting my right to self-determination and the reasonable intellect to make that decision. It is nobody's right to take that away from me – why can I not allow you to study many diseases?"

Another group opposing the project is the Iceland Psychiatric Human Rights group, which opposes the alleged monopoly that Decode Genetics would have on Iceland's genetic information, and questions the companies intentions for using the data.

The psychiatric group said in a document that Decode Genetics could target insurance companies as possible clients.

Some researchers worry the information could be leaked, leaving study participants open to discrimination by insurance companies or potential employers.

"I'm strongly constrained from revealing anybody's identity – I have no idea who they are, no way of matching up identities and DNA, and I like it that way," Weiss said. "I'm not suspicious that Decode Genetics would leak out information intentionally, but it could happen."

It's possible that the genetic information could be used fairly, Weiss said. If someone is found to have a predisposition for breast cancer, for example, insurers could provide coverage under the condition that the person is checked on a regular basis. It could be enforced in the same way as the use of helmets or seat belts, he said.

Other reserachers see genetic data in a different light than smoking or wearing a helmet.

"If you smoke, you know there's a risk; if you ride motorbike, you should pay more for insurance. But in the case of your genes, there's nothing you can do about it," said Georg Widera, a senior scientist at Genetronics, a gene delivery system company in San Diego.

Stefansson said he expects to have the database programming complete in three years, but that useful information will come from the database even sooner.

Collaboration between the two companies has already shown promise. In March, the two companies announced they were close to locating the site of a gene that causes osteoarthritis.

Some also question "what should be used for profit without return or permission from the individuals who supplied the information," Weiss said.

But the Icelanders will receive some restitution: They'll be entitled to access to any drugs that result from the research free of charge.